[Congressional Record (Bound Edition), Volume 162 (2016), Part 11]
[Senate]
[Pages 14766-14767]
[From the U.S. Government Publishing Office, www.gpo.gov]




                        21ST CENTURY CURES BILL

  Mr. ISAKSON. Mr. President, first of all, I commend the Senator from 
North Dakota who is a Member of the Veterans' Affairs Committee for his 
diligent efforts, his thoughtful words, and all he does for veterans on 
the Health, Education, Labor, and Pensions Committee, and I appreciate 
what he said and support his efforts.
  As a 71-year-old citizen of this country, one who has been in 
business, has been fortunate to be married 49 years to a wonderful 
woman and raised a family, one who has been in public life for 40 
years, you learn that there are three kinds of people in the world: 
those who make things happen, those who watch things happen, and those 
who wonder what the hell is happening.
  We have the chairman of the Health, Education, Labor, and Pensions 
Committee, Senator Lamar Alexander, who is one of those people who 
makes things happen. What we are going to do on the Cures bill in this 
body next week is nothing short of remarkable,

[[Page 14767]]

but it is an example of somebody who cares and is ready to do the hard 
work that legislating can bring about.
  It is a bill that incorporates many of the provisions of this 
administration and Members of this Senate, things that have been worked 
on for years and things that will save and improve lives in America.
  For me, it is personal for two or three reasons. One reason is the 
pediatric rare disease provision. In 2005 I met a young lady named 
Alexa Rohrbach. Alexa was 5 years old when I met her. She came to lobby 
me about finding cures for incurable diseases and incurable cancers. 
She had a cancer called neuroblastoma. She won my heart over. I have 
her picture in my office. I had dinner with her parents 2 weeks ago in 
Atlanta at the Rally Foundation annual dinner.
  Alexa got her angel wings 2 years ago and is in Heaven looking down 
today, but I am testifying on Alexa's behalf that the more we can do to 
accelerate research and development for cures of rare diseases, the 
more we can make the lives of people happy and long, rather than short 
and sad. Alexa Rohrbach was an inspiration to me, and I speak today for 
the 21st Century Cures bill, in part, because of Alexa Rohrbach because 
if this bill had been in place before I met her in person, she would 
have been saved from the rare disease she had. We would not have to 
talk about her in the past tense but only in the present.
  The second reason is, there are things I worked on for a long time 
that are coming to full fruition. One of the measures is home infusion. 
I have a wonderful son named Kevin, who was almost killed in an 
automobile accident when he was 18 years old in 1989.
  Kevin got a bad leg infection. He had the bottom part of his leg 
blown off and lost a lot of the bone, and they had to put a lot of 
replacements in, a lot of metal rods. He had to lie in a hospital bed 
with antibiotics running through his system to keep his bone marrow 
from getting infected.
  When he came home, for the next 6 months he had to be administered 
antibiotics daily. My wife and I administered those through home 
infusion. He was able to recover from this disease at home, in his own 
bed, with his own parents attending to him. Under the law today, for 
home infusion to be reimbursable, it is only reimbursable if you are in 
the doctor's office or if you are in the hospital. If you are doing it 
at home with visiting nurses or any other way, you can't do it.
  What costs more, a hospital or home visit? Obviously, a hospital. 
This bill provides a way for us to find a way forward to reimburse home 
infusions at home. It is the safest, best, most efficient, and least 
expensive way to deliver home infusions, incentivized by the 21st 
Century Cures bill.
  We also know that neurological diseases such as Parkinson's, MS, and 
Alzheimer's are more prevalent than ever before. They are the No. 1 
disease for people my age and the generations to follow. This bill 
creates a neurological disease registry of all these diseases which 
have common characteristics to help the CDC in early diagnosis and 
early treatment. I, as one who suffers from one of those diseases, can 
tell you the more you learn from one you can tell about another.
  I commend Senator Alexander in his efforts to bring that forward so 
we have a neurological disease registry that works, that we have an 
expedited review process for drugs of rare cancers in children, and so 
we do the things we need to do to cure the bad diseases of the 20th 
century so the lives of the people in the 21st century are better.
  Chairman Alexander is a unique individual. He is a former college 
president, a U.S. Senator, candidate for president of a university, and 
a great chairman of the Health, Education, Labor, and Pensions 
Committee. If we pass this bill as a trademark to him next week, it 
will be, in large measure, because of his belief that if you give 
everybody a chance to be a part of the same thing, whether Republican 
or Democrat, rich or poor, northerner or southerner, they will work 
together to do the right thing for the American people. Senator Lamar 
Alexander deserves our credit, deserves our appreciation, and I thank 
him for allowing me as a member of the committee to have the chance to 
work on the 21st Century Cures legislation.

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